We're Not Broken

by Eric Garcia

  This was true for Garcia-Spiegel. When he took a course on queerness around the world in his first year at Sarah Lawrence College, he struggled academically because he was not getting the proper accommodations. When he told his professor that, “He basically just implied that I wasn’t qualified to be at college,” Garcia-Spiegel said, even though he’d taken three Advanced Placement classes in high school and gotten the highest score possible in all of them. “It was just like this whole cycle of kind of not being taken seriously as a trans autistic person in a queer space because [I am] autistic.”

  Autistic transgender people face overwhelming discrimination and are often the subject of absurd myths. When J. K. Rowling, author of the Harry Potter books, began commenting extensively against transgender activism, she wrote that in the past decade, there had been a “4400% increase in girls being referred for transitioning treatment” and that “autistic girls are hugely overrepresented in their numbers,” which is to say, transgender boys and men who were assigned female at birth. Rowling’s comments essentially implied that transgender autistic people must have been deceived or given wrong information to want to transition. But Kris Guin, an autistic transgender man, wrote that Rowling’s comments were a noxious mix of transphobia and ableism because they implied autistic people were incompetent and incapable of making their own decisions.

  Some researchers have speculated—certainly less malevolently than Rowling—that just as increased levels of testosterone in the womb might lead to being autistic, it also might contribute to less common sexual identities and gender identities, as Spectrum News reported in 2020. But Jeroen Dewinter, a researcher at Tilburg University in the Netherlands, told the outlet that prenatal testosterone did not explain why autistic people assigned male at birth might present more feminine qualities.

  Few people listen to autistic transgender people or ask them their reasons for transitioning. Their dual identities are not competing; they are complementary. The acceptance of each affords transgender autistic people new freedoms they otherwise would not have. A lot of the bias against this population is also rooted in the idea that autistic people cannot understand what is in their own best interests. This pernicious ableism compounded with transphobia implies that autistic people cannot understand their own gender identity.

  Still, autistic people know what they want and need. They are the ones who know best about their identities and how to ensure that their bodies line up with what is in their minds. The only thing they need from other people is affirmation and support.

  “A Girl Like Me”

  There is still plenty of work to do to close the gender gap in the autistic community, though in recent years, significant strides have been made increasing the visibility of autistic women and girls. The DC-based Autistic Women and Nonbinary Network services autistic people across the gender spectrum and it has released books like What Every Autistic Girl Wishes Her Parents Knew. Furthermore, television portrayals of autism are now broadening to include autistic girls as well as boys.

  Australian stand-up comedian Hannah Gadsby discussed being autistic in her second major stand-up special Douglas and said learning she was autistic allowed her to “be kinder to myself.” Kayla Cromer, who is autistic herself, played an autistic character named Matilda in the show Everything’s Gonna Be Okay. Cromer came out as autistic during a press event for the show in 2019. She admitted that for years she didn’t think she was funny. But her acting coach said she had quirks that resembled Sheldon Cooper, a character on the television show The Big Bang Theory who is often speculated to be autistic. (Though the show’s creators object to the label, I’ve always seen the character as a reductive portrayal that is the autistic equivalent of blackface minstrelsy. Sheldon perpetuates the stereotype of a geek savant whose eccentric behaviors and rudeness toward other people—particularly women—are either a source of comedy or excused by his genius.)

  Fortunately, representation of all types of autistic people is improving because we’re now recognized as gatekeepers for telling our own stories. When Pixar Animation Studios released the short film Loop in 2020, they were careful to include autistic voices when developing the neurodivergent protagonist. The movie takes place in a summer camp where Renee, a nonspeaking autistic girl of color, and Marcus, a neurotypical African American boy, must navigate a lake in a canoe. Erica Milsom, the film’s director, told me that in the initial storyboards, Renee was white. But when she consulted with the Autistic Self Advocacy Network, they suggested Renee be a person of color to bring awareness to the fact that autism occurs across all races.

  The decision to make Renee be both autistic and a girl was incidental, Milsom added. All she knew was that she wanted to have a nonspeaking character represented in the movie because she knew similar people in her life.

  “I was like, ‘Okay, well, I need to have a specific reason why this person doesn’t talk,’” Milsom said. This led to her asking friends who have children who communicate in different ways. “As we went through and talked together, people started talking about autism and all the layers of sensory experience that differ along with communication and language,” Milsom said. “I just didn’t know that stuff, and I’m like, ‘This is amazing. This is such an interesting, deep identity and point of view.’”

  To me, the effect of autistic people’s input was clear in Loop. Throughout the first part of the film, Renee plays the ringtone on her phone to self-soothe. Any autistic person who likes hearing the same sound, whether it’s the same song played on a loop or watching the same movie over and over, could absolutely relate. Showing a nonverbal autistic person using a ringtone to make herself feel better is significant, since too often, the things autistic people use to cope with the world are pathologized. It’s especially important to use a female character of color to show this, as it broadens the scope of who people think can be autistic.

  This is a big shift from the film Rain Man, whose consultants, Bernard Rimland and Darold Treffert, insisted that the movie had to end with Dustin Hoffman’s Raymond Babbitt character returning to an institution. Other programs with autistic characters, like ABC’s The Good Doctor, have hired consultants, but it’s unclear if they are autistic or not. The popular children’s TV show Sesame Street worked with both Autism Speaks and ASAN to create Julia, its first-ever autistic character, although ASAN eventually parted ways with the show because its members felt the marketing around Julia further stigmatized autism and autistic people. Milsom’s consultation with an autistic-led organization for Loop is truly progressive, as it allowed autistic people to have the strong creative input to make sure Renee accurately portrayed autism.

  I also noticed the influence of autistic voices in Loop when the movie showed what happens when autistic people experience a meltdown. Milsom said she spent two and a half months researching this scene by watching videos of meltdowns on YouTube.

  “I feel like if you’re writing, you need to know the interior life of the character,” she said, and as a result, she wanted to know not only what a meltdown felt like, but also what preceded it and what was needed in the moment. Meltdowns are, of course, difficult but also a normal part of the autistic experience.

  Milsom is grateful for autistic people who tell their stories. She consulted with autistic friends and organizations while creating the film, and she even cast Madison Bandy, a nonspeaking autistic girl, to play Renee. To make her as comfortable as possible, the audition was held at Bandy’s art center and her vocal parts were recorded at her house.

  The creation of fictional autistic female characters that are played by autistic people coincides with the fact that autistic women and girls are becoming public figures in areas only tangentially related to autism. Greta Thunberg, the teenage Swedish climate activist, is perhaps the most famous autistic person in the world. Her supporters have suggested she deserves the Nobel Prize. Just like Eryn Star, Thunberg was born a generation after me, which means she had the good fortune of growing up in a society that
at least had a working knowledge of autism. This might be why Thunberg sees being on the spectrum as a reason she can be so strident in her advocacy on climate change. But Thunberg received a diagnosis only because learning about climate change in primary school sent her into a deep depression. She ate little, lost a tremendous amount of weight, and stopped speaking.

  Thunberg’s story—both her triumphs and the fact that it wasn’t until she was eleven that she was diagnosed—show the progress that’s been made but also highlight how painstakingly slow the paradigm shifts for autistic women and girls are. The same can be said for all femme-presenting people and queer people. And it’s even tougher for people who, unlike Thunberg, don’t have supportive parents who are willing to help and accept them. Our misunderstandings about autism are rooted in the idea it affects only boys, and that misperception intersects with the expectations our society has about women. Before we can address the real gap in diagnosis and services for autistic women and LGBTQ people, there first needs to be an acknowledgment that they are a vital part of this community.

  8

  “Say It Loud”

  * * *

  Race

  No news incident shook me to my core more than the 2016 shooting of Charles Kinsey in north Miami. Kinsey, who is Black, was the behavioral aide of Arnaldo Rios-Soto,a Latino autistic man who had wandered away from the home where Kinsey was caring for him.

  When police found Rios-Soto sitting in the middle of a road, they thought he was armed, although he only had a toy truck. In video that captured the shooting, you can see Kinsey try to de-escalate the encounter while also trying to assist Rios-Soto. When the police shot Kinsey, he was lying on the ground with both hands in the air. Despite being left on the ground bleeding for twenty minutes without medical attention, Kinsey survived.

  Still, Kinsey’s shooting devastated me. Had he not been taking care of Rios-Soto, he likely would not have been shot. At the same time, as a Black man, he likely knew his body was always vulnerable in every police interaction, but he still attempted to save his charge. But in the end, he wound up another Black victim of police violence, though he thankfully lived. The fact that he was shot while police were responding to a Latino man was terrifying because it meant that those who were even in proximity to autistic people were also not safe. I knew that Black and brown people were more vulnerable to police violence. I had graduated from college a few months before police officer Darren Wilson shot Michael Brown in Ferguson, Missouri, which led to widespread protests and cemented the chant of “Black lives matter” in the public consciousness. Only a few days before the Kinsey shooting in north Miami, Philando Castile, a Black man in Minnesota, was shot and killed by a Hispanic police officer. But until Kinsey’s shooting, I hadn’t considered how autism factored into the epidemic of police brutality. I didn’t think that autism, which sometimes makes it difficult for me to make eye contact or requires stimming to calm down, could be seen as a threat. My fear increased when I read that the local policemen’s union justified the shooting by saying Rios-Soto, not Kinsey, was the target. There is this perception that autistic people are permanently children and angelic, but that is largely because the common archetype of an autistic person is a white person.

  This “perpetual child” image is the result of the fact that most autistic people featured in the media are white. America largely assumes innocence (and excuses fault) for many white people, and often in the case of autistic people, society chalks up their mistakes to their disability. Autistic people of color—be it Black or brown—aren’t given that luxury. We aren’t given the benefit of the doubt, and our odd behaviors—the way we rock, the way we avoid eye contact, the way we stim to calm ourselves down when around police—become cause for suspicion. All of this stems from the perception that autism is a white condition; a racialized autism means that Black and brown people on the spectrum are overlooked by clinicians while their behavior is perceived as dangerous by the police and the broader public. A lack of focus on autistic people of color is the difference between innocence or guilt in the eyes of the law and the world.

  Reading how the police saw Rios-Soto as a threat showed me the exact difficulty that comes with navigating being autistic in a nonwhite body—your neurotype is not something that can be known, so the wrong call or movements can be deadly.

  “American Skin”

  A. J. Link is an affable and inviting person. When I showed up at his doorstep a few days after Christmas in 2019, he welcomed me into the immaculate apartment he shares with his roommates and his dogs.

  Link is roughly my height (I’m around five eight) and was wearing a sweater and sweatpants. He sports a full beard that I’m envious of, given my inability to grow a proper one. Link was finishing his third year of law school at George Washington University (something that you would never have guessed from his laid-back attitude) and I was here to interview him because he founded the school’s Atypical Student Society to assist neurodivergent students.

  Link told me that the George Washington University law school prided itself on being diverse and inclusive, “but something that gets lost in diversity is neurodiversity.” While almost 10 percent of the student body at the law school is registered with its disability support services, the real number of students in need of support is probably double that because of the stigma attached to disability.

  “No one wants to be looked at as ‘other’ or ‘special’ or ‘handicap’ or whatever,” he said. “It’s tough and frustrating, but I hope that we can teach people that neurodivergent individuals are just different, not less.”

  Sitting in Link’s living room as Liverpool Football club plays in the background, I was suddenly reassured by this scene: me, a Latino journalist, interviewing Link, an African American autistic advocate at a top-tier law school. Neither of us fit the stereotype of what an autistic person looked like, yet here we were.

  The outdated idea that autism affects only white people goes back to the earliest studies about the condition. Again, we must return to Leo Kanner’s initial 1943 study. In “Autistic Disturbances of Affective Contact,” of the eleven children in his survey, none were people of color. Nine of them were from Anglo-Saxon families and the other two were Jewish. He later said “all but three of the families” of most of the children studied were represented “either in Who’s Who in America or American Men of Science, or in both,” implying that autism affected only the highest socioeconomic classes. In a cruel irony shown in a 2002 documentary entitled Refrigerator Mothers, one Black mother named Dorothy Groomer was told by clinicians that her son Stephen couldn’t be autistic and she couldn’t even be considered one of those cold and unloving parents as described by Bruno Bettelheim.

  Kanner’s idea that autism affects mostly affluent, upper-middle-class families persists. This comes at the expense of autistic people of color, women, and gender nonbinary people who are often overlooked, misdiagnosed, and fail to get the services that they would otherwise receive. A 2007 study from the Journal of Autism and Developmental Disorders found that African American children “had 2.6 times the odds of receiving some other diagnosis” compared to white children. Over time, there has been some effort to reduce the diagnosis gap. In 2020, the Centers for Disease Control and Prevention released a report about the state of autism in 2016 that said that the gap between white children diagnosed with autism compared with Black and Hispanic children was narrowing and that for the first time, the Autism and Developmental Disabilities Monitoring Network, which tracks the number and traits of autistic people, found no difference between the number of Black and white children identified with ASD by age eight. But still, white and Black children are 1.2 times more likely to be diagnosed than Hispanic children. That the gap has narrowed is welcome news indeed, but the fact that it took until 2016 to close the gap between Black and white autistic kids demonstrates that the clinicians who developed the diagnostic criteria for autism did not have the former in mind.

  Even when acco
unting for all socioeconomic factors that might mitigate the chances of Black children receiving the same diagnosis as white children, Black children still face major hurdles to receiving the diagnosis. A 2002 study in the Journal of the American Academy of Child and Adolescent Psychiatry surveyed 406 children who were eligible for Medicaid in Philadelphia and received services for autism between 1993 and 1999. It found that white children were diagnosed at 6.3 years of age while Black children were diagnosed at 7.9 years of age, and they required more time in treatment before they were diagnosed. Children who receive Medicaid are usually from poor or low-income families or are disabled, so this was as close to a symmetric comparison of white and Black children as possible. Years later, the CDC confirmed that Black and Hispanic children get diagnosed later than white children.

  Link, for example, wasn’t diagnosed until his early twenties, despite the fact that his parents had him tested in childhood. He grew up in Polk County, Florida, where he was one of the few Black kids at a predominantly white school. “I think that stopped people from going deeper into why I was weird and different,” he said.

  Link said he was finally diagnosed in college because his therapist suggested it. He was struggling at the University of South Florida. “I would often skip exams or not turn in papers, or turn papers in late, which I still do, but at least I know it’s because I have executive-functioning issues and that’s just the way it is.”

  He spoke with his therapist about why he felt different from his peers, which led to his diagnosis of what was then labeled Asperger’s syndrome. After a month of testing, it was confirmed he was on the spectrum. “It made sense. Being told that I was autistic made my life easier in a way. I didn’t have to force myself to mask, I didn’t have to pretend like I was enjoying what everyone else was enjoying,” he said.