We're Not Broken

by Eric Garcia

  Furthermore, the little research that has been conducted shows that there is a raft of comorbid health conditions that affect autistic people, but much of the research has been conducted outside of the United States.

  One study from 2015 funded by Sweden’s Karolinska Institute and the city of Stockholm surveyed more than 27,000 autistic adults and compared them with 2.7 million nonautistic adults. The report found that the group of “low-functioning” autistic people had a higher mortality rate than that of the group of “high-functioning” autistic people but that both had a higher mortality rate than the general population. Furthermore, the leading cause of death for the “low-functioning” group was epilepsy; the most common cause of death for autistic individuals without intellectual disabilities was circulatory conditions, like heart disease, followed by suicide.

  Of the $364,435,254 spent on autism research in 2016, only 2 percent went toward researching life-span issues. By comparison, that same year, the United States spent 35 percent on autism and biology and 24 percent on risk factors, which included the role of genetics, epigenetics, and environment in autism’s development and the interaction of these factors. Combined, these two areas of research account for more than half the money spent on autism, yet they are mostly about what causes its symptoms. That means only a small fraction of the money goes toward helping autistic adults as they age.

  Budgets reflect values. Where you choose to spend money indicates what is important to you. Plenty of autistic people worry that a focus on biology and genetics is essentially a focus on eliminating or mitigating autism. To them, all this focus on biology means that politicians and lobbyists still aren’t listening to their needs. That, combined with the fact that so little money is spent on life-span issues, proves that the United States is more interested in finding out why people are autistic and less interested in understanding what autistic people need right now. Studying biology is not inherently bad, but this disproportionate amount of funding is an example of how America is talking past autistic people.

  When autistic people are consulted, they can offer new insights into a better approach to health care for their community. That was the case in 2012 when the Journal of General Internal Medicine published a study in which a majority of the researchers were autistic. They used a community-based participatory research (CBPR) model that surveyed 209 autistic and 228 nonautistic individuals. The study found that autistic adults had lower composite scores for patient-provider communication, general health care, and chronic condition self-efficacy than their nonautistic counterparts. Furthermore, autistic adults were less likely to have received a tetanus vaccine and, if they were female, to have received a Pap smear in the previous three years. The study also found they were twice as likely to have used the ER in the past year. The researchers said it could provide a template for future research.

  “Our CBPR process allowed us to adapt instruments to be accessible to this sample of autistic adults, primarily by increasing the clarity and precision of the language used in the instruments,” the study said.

  But physical health is only part of the equation for autistic people, and it is possible that autistic people’s mental-health needs might be more acute than neurotypical people’s needs. One 2018 meta-analysis of sixty-six studies in the Journal of Abnormal Child Psychology found that people with autism spectrum disorder “are 4-times more likely to experience depression in their lifetime.” Suicidal ideation is something I am all too familiar with. I’ve lived with depression as long as I can remember and have been on numerous antidepressants over the years. When I find myself in the grip of a depressive episode, it is nearly impossible to get out of bed. (The whole myth that depression makes you a good writer never made sense to me; how can you write when you can’t even get out from underneath the covers?)

  When I feel like I’m facing intractable obstacles—be it having my heart broken, feeling socially isolated, feeling like I let down my family and friends, or just feeling like I want the pain to stop—I have on occasion just wondered whether it was worth it to keep going when pain and despair felt insurmountable.

  Thankfully, every time, my other senses have prevailed, mostly out of obligation toward other people. The unfathomable despair I felt after my first year of college was supplanted by pride when my sister, Stephanie, got into Loyola Marymount University, which made me want to see her graduate college. When I thought about suicide as a student at UNC, I remembered my friends at the Daily Tar Heel. The times I was nearly suicidal because I had gotten myself into some mess with some woman (most of the time it was my fault and I had put too much pressure on her), I would call the suicide hotline. (If you are based in the United States and feel suicidal, call the National Suicide Prevention Line at 1-800-273-8255. I have called and it helps.)

  At the same time, I worry for autistic people who don’t have the same support systems I do. Many are kept isolated in institutions and are viewed as unempathetic and unable to feel for others, which only adds to their feelings of loneliness. It is my bonds with other people, my sense of duty, and my ties to those around me that saved me. Thinking of autistic people who died by suicide, I wonder if a community could have saved their lives the way it did mine.

  Only in the past six years have I started seeing a therapist and only even more recently have I started talking more openly and frankly with her about my depression and the things that drive it and fuel my self-destructive behavior.

  I know I am fortunate because I am alive. Cal Montgomery noted that we don’t know what autism in and of itself looks like; we only know how autism informed by trauma presents itself. Whether it is autistic people who don’t speak or those with intellectual disabilities who have been subjected to shock therapy or those, like Lydia Wayman, who have lived through nursing homes and doctors questioning their agency, that trauma becomes inextricable from our lived experience. It is sewed into our identity as autistic people. That trauma won’t disappear automatically. It will last and linger. But instead of discrediting our experiences, health-care professionals need to honor and respect our trauma in order to help heal all those injuries that the world has inflicted.

  6

  “Ain’t Talkin’ ’Bout Love”

  * * *

  Relationships

  I arrived in Newark, California, a suburb of San Francisco, on a Sunday afternoon, which is pizza day at the Williamses’ home. Chris and Cori Williams’s kids, Calvin, Charlotte Ruby, and Cassidy Luna, all autistic just like their parents, greeted me by rattling off different breeds of cats and dogs. I met their two dogs and their twelve-week-old black kitten while they were watching YouTube videos on the living room’s large-screen television. Chris joked with me that while some autistic kids didn’t speak, some were hyper-verbal, and his daughter Charlotte definitely fell in the latter bucket.

  When Chris and Cori met, in 2004, neither of them knew they were autistic. At the time, Cori was living in the United Kingdom and seeing another person, but she was planning on returning to her home state of Utah, where Chris was living at the time, when she created an online dating profile. Chris said there was an instant connection.

  “All the ingredients were there for me at the very beginning, just in terms of feeling comfortable, feeling excited, just feeling very happy to be in her presence,” he said. For Cori, the first thing that stood out about Chris was his voice.

  Because of the time difference, their messages would be the first thing they’d see in the morning. “He would send me an e-mail when I’d be sleeping, and so I would wake up to an e-mail where he had typed out some e-mail about a song, and then I would listen to the song,” Cori said. In addition, they would exchange music, like the Verve’s “Drugs Don’t Work,” “You’ll Accomp’ny Me” by Bob Seger, and “The Blower’s Daughter” by Damien Rice. I could tell that they enjoyed reminiscing about those early euphoric days when you get to know the person you’ll eventually love.

  They stopped talking for a while, but Cori return
ed to Utah after her mom’s brother died. Around that time, Chris messaged her, and she remembered how much she liked his voice and his taste in music. What really sold Cori on him was that shortly after they began dating, Chris started to help out her sister, who was a new mom and also had a four-year-old. Chris and Cori would send her sister to bed and then put the baby to sleep together. She remembers leaving the room to make the baby a bottle of milk and coming back to find Chris totally enamored. “He was like, ‘She’s so tiny. She’s so beautiful,’ and I was like, ‘I’m going to marry that boy.’”

  They got married in 2007.

  In many ways Cori and Chris’s romance is a typical boy-meets-girl love story, which is the case for many autistic couples who date in the same ways neurotypical people do. However, because modern dating is dominated by unspoken rules and vague social cues, some autistic people face a unique set of challenges. For many couples—Cori and Chris included—there are some explicit benefits to online dating as opposed to real-world dating. For one, the people using dating sites or apps like Tinder or Bumble are there for an explicit reason, thus removing the ambiguity that might come with flirting.

  One survey of seventeen autistic individuals released in Sexuality and Disability found that six participants thought online dating was easier and four said there was no difference between meeting in person and online. But while participants said they enjoyed the convenience of online dating, like the ability to fill out their profile information to have it readily available during the dating process, one of the concerns many cited was a lack of safety because of the risk that comes with meeting strangers online, particularly “people presenting false images,” which is “troublesome especially for Aspies as [we] tend to be a bit naive and trusting.”

  Chris came to learn he was autistic when Cassidy Luna was diagnosed. They began searching for as much information as they could about autism, including reading Steve Silberman’s book NeuroTribes and following autistic voices on Twitter, Chris started to recognize some of the hallmark characteristics of autism in himself. When Chris heard an episode of the comedy podcast Aut-tastic, he studied himself, spoke to his wife, and finally in 2016 went for a “battery of tests and interviews.”

  “It was a powerful moment. I think I kind of felt seen in ways I really appreciated,” he said.

  Cori has strawberry-blond hair, which she pulled back into a ponytail, and was wearing blue flip-flops during our interview. Cori was the last in the family to realize she was autistic, and though she is self-diagnosed, she also learned that she might be on the spectrum through her daughter Cassidy’s process. While researching autism on behalf of her daughter, Cori saw a video about how autistic females mirror (which is to say follow) others’ traits, which made her think, “Holy crap, I might also be as well.” She said her upbringing in Utah was abnormal, but she never considered the reason behind it. “I just struggled in school socially, for sure; it was awkward, but I attributed it to being poor and non-Mormon in a rich Mormon area,” she said.

  Despite families likes the Williamses’, years of misconceptions have made autistic people seem incapable of being good partners. Much of this is rooted in the idea that autistic people are incapable of empathy, which is simply not true. In 2007, USA Today quoted Katherine Tsatsanis of the Yale Developmental Disabilities Clinic as saying, “Almost by definition, an Asperger’s person would not form an intimate relationship, get married and have children,” since “they don’t form connections. The desire, the drive and the social knowledge is lacking.”

  When autistic people do try dating, it is often treated as a curiosity for people to gawk at, as was the case with Netflix’s documentary series Love on the Spectrum, which chronicled autistic people in various settings trying to date and find love. There are countless stories about neurotypical people asking their autistic classmates to prom, which often makes dating autistic people seem like an act of charity performed by popular cheerleaders or jocks helping a poor, unloved autistic person.

  But this narrative that autistic people are incapable of relationships or get dates only out of pity is simply false. Plenty of autistic people do have partnerships and often families that thrive specifically because they understand each other’s ways of functioning in the world. Both Chris and Cori say that there is a benefit to their both being autistic and synchronizing on the same level, though they are neurodivergent and autistic to different degrees. Cori told me that she thinks that people in her past relationships were likely autistic.

  “I do think that you’re attracted to the quirkiness when you have it by yourself,” she said. “Autistic people sometimes have this need for sameness, and I think those are things that did attract us to each other.”

  Seeing the way Chris and Cori work together as a parenting unit and a couple contradicts the conception that autistic people cannot form relationships. The idea that autistic people, particularly autistic men, are incapable of finding love is at best fodder for countless television shows and movies, and at worst it feeds into a toxic stereotype about autistic men who will eventually turn on women. Furthermore, stereotypes about autistic people’s lack of capacity for empathy and caring have created pernicious tropes about their inability to understand consent and sex and spreads the idea that they are unable to adequately parent children.

  “How Do I Know When It’s Love?”

  The idea that autistic men are somehow awkward, cold, unloving, or unable to interact with women goes back to before the public understood autism as a spectrum. In 1984, therapist Jean Hollands wrote a book called Silicon Syndrome: How to Survive a High-Tech Relationship, which focused on how women could navigate “high-tech relationships” with “sci-tech” men who “tried to address problems in intimate relationships by seeking data.” The book’s introduction lamented husbands who appeared more interested in how computers worked than in their wives. While the book was released before the understanding of autism was expanded to include what would later become known as Asperger’s syndrome, Steve Silberman wrote that “Hollands could have swapped the term Asperger’s Syndrome for Silicon Syndrome and barely changed another word in the text.”

  Since then, television shows like the Netflix series Atypical revolve around autistic people—mainly autistic men—struggling to navigate dating. The problem with these portrayals is that they often give autistic men a pass for treating women terribly. In one of the early episodes of Atypical, the autistic protagonist Sam shuts his girlfriend Paige in his bedroom closet after she holds his pet turtle. Later on, Sam breaks into the house of his therapist, on whom he has a crush. While both scenes are meant to elicit laughter, they perpetuate the stereotype that autistic men don’t know how to treat women with respect.

  What’s worse, these lighthearted portrayals let autistic men off the hook for their bad behavior. Certainly in my own life, I have not always treated women with respect, but I try to hold myself accountable nonetheless. Going back to when I was in fifth grade, I would send long-winded letters to girls I liked. Later, in high school, college, and even into adulthood, if I liked a woman, I would try to hang around her and shower her with gifts or bombard her with texts in hopes she would eventually like me back.

  The thing I most regret was how I treated one of my first roommates in DC when I moved here full-time in 2014. We initially hit it off as friends, but I wanted more. Even after she told me I was becoming overbearing, I continued to pursue her, and ultimately, I wound up driving her even farther away. I also regret that this behavior continued for years with other women, to varying degrees. It would be easy to simply chalk this up to me being autistic, to not understanding social cues or not being able to read women’s minds. But that would be using autism as an excuse; it would imply that autistic people are incapable of intimate relationships with neurotypical people because we will always blow them up with our own behavior.

  The truth is the mistakes I’ve made with women are not directly caused by my autism. As I started to address my relat
ionships in therapy, I connected this behavior to my childhood. Growing up, I was incredibly lonely. In the first ten years of my life, we moved from Chicago to Florida to Wisconsin to Northern California to Texas and then finally settled in Southern California. I was also bullied constantly when I was growing up. I still remember when my classmates in fourth grade coaxed me into moving the front of my body up and down a tree; I didn’t realize it was something called “humping” and that it was sexual until much later. When I was a freshman in high school, in an effort to fit in with kids, I frequently picked on other kids, harassing, hazing, and humiliating them. In one of these cases, I was the kid being hurt, and in the other, I was doing the hurting, but at its core, I was desperate for any kind of love and friendship.

  I should add that my home life was great and my parents loving. But when they divorced, it wasn’t easy for me. I frequently felt torn between the two, like I was forced to pick sides. Eventually, my mom began dating Bob, whom she was with for years, and even though they never married or lived together, I thought of him as my stepdad. Still, it hurt that after we had great time going to museums or a concert or just spending a weekend together, he’d leave. That feeling of being an outcast at school while feeling torn at home made me desperate for love in any form. Like many straight teenage guys, I wanted a girlfriend but didn’t really know how to talk to women.

  At the same time, I had heard that the likelihood of autistic people getting married was low, which depressed me because I wanted to be loved. What if my autism meant I would never find anyone who would accept me for me? This makes my reporting about and furthering my own understanding about autism all the more ironic. Reporting this book and integrating myself into the larger community shattered my own assumptions of what autistic people were capable of doing. I’ve met people like Chris and Cori, who both have lower support needs but have kids who require more support. I’ve met couples with mixed levels of support needs who dutifully support each other, and I’ve met couples where one person is autistic and the other is neurotypical. This has allowed me to see what potential dating and marriage scenarios might be the best fit for me. As of right now, I am still undecided about family life. Like many kids of divorced parents, I take the decision to have children very seriously and don’t want to put a child into a scenario where they might be in a broken household. I also want to make sure I am financially stable, mentally mature enough, and willing to devote my entire life to any offspring. I want to be present physically and emotionally for any child I have. That being said, I am keen to at least find a partner to go through life with.