by Eric Garcia
Link said he doesn’t know for sure how his life would be different if he were white, but he thinks that he would have received his diagnosis much sooner rather than being labeled as a problem child with behavioral issues.
Unfortunately, this is a common problem for Black autistic children. According to the 2006Journal of Autism and Developmental Disorders study, Black children were 5.1 times more likely to be diagnosed with adjustment disorder—which is characterized by stress, sadness, or hopelessness, or physical symptoms from a stressful experience—than with ADHD. Black children are also 2.4 times more likely to receive a diagnosis of conduct disorder—wherein children have persistent behavioral and emotional problems characterized by “difficulty following rules, respecting the rights of others, showing empathy, and behaving in a socially acceptable way”—than a diagnosis of ADHD. The same study also noted that clinicians might also diagnose Black children with oppositional defiant disorder.
Finn Gardiner, who is Black and autistic, was diagnosed when he was around two or three, but he still faced extraordinary disciplinary actions in elementary school when he had meltdowns because of stress or bullying.
“I feel that I experienced a lot of disproportionate disciplines, and I feel if I were white and autistic, I don’t think I would have been excluded from class as much,” he said. At the same time, Gardiner was in the gifted and talented program throughout much of elementary school and middle school. “But even with that label I was treated as a troublemaker, you know, because of my race and disability,” Gardiner said. “I’m pretty sure if I were white and I had a gifted and talented label and I was complaining [about] the lack of challenge and being bullied, they would have reacted very differently; they would have been sympathetic.”
Link’s and Gardiner’s stories diverge in many ways; Link wasn’t diagnosed until college and Gardiner was diagnosed as a toddler. One is a lawyer and the other is a researcher. But the fact there was an immediate impulse to label them both as problem children rather than accommodate them shows how racist ideas about Black people permeate how autistic Black people are treated. It shows there is an impulse to punish them for certain behaviors rather than seek to understand the cause of their actions. Autistic children are given little empathy to start, but Blackness reduces any small ounce of sympathy they otherwise might receive.
Sara Luterman, an autistic writer and journalist based in Takoma, Maryland, said that the fact that she is white prevented her from severe punishment in school, noting that she was suspended rather than expelled when she threw a chair at her teacher.
“I got in fights with other kids a lot. But I was also very small, and very white, and very female,” she said. “It’s like a teeny-tiny chair, and I can’t throw it that hard, so nobody actually got hurt. And I think that made a difference. And also, just there’s this perception that I’m not threatening. I’m just easily upset.”
“I Contain Multitudes”
The fact that autism is seen as a “white” condition affects who white people perceive as autistic and therefore worthy of accommodation. But there is evidence that Black parents perceive symptoms of autism differently from white parents. A 2017 study in Autism found that “Black parents reported fewer concerns about their child’s ASD-specific behaviors than White parents.” But Black parents’ oversight wasn’t because they didn’t care about their autistic children. The same study said that “cultural norms surrounding discussion of ASD within Black communities may also impact parents’ knowledge about the disorder” and that “parents of different cultural backgrounds may also have different expectations or interpretations of a child’s behavior, which may affect their report of concerns.” This is to say that it is possible that different cultures may have different values, which leads to parents emphasizing different aspects of their children’s behavior and development.
The discussions around police violence in the United States helped the term intersectionality enter the public consciousness. While the term is frequently thrown around in political discourse and social media, it was defined by Black feminist legal scholar Kimberlé Crenshaw in 1989 in a legal paper. Essentially, intersectionality means that people’s multiple identities often create different experiences of discrimination and privilege than those who might occupy one marginalized identity. In Crenshaw’s text, she said that Black women experienced discrimination that was similar to both Black men and white women but also unique because of how these identities intersected.
“Often [Black women] experience double-discrimination—the combined effects of practices which discriminate on the basis of race, and on the basis of sex,” Crenshaw wrote in 1989. “And sometimes, they experience discrimination as Black women—not the sum of race and sex discrimination, but as Black women.”
Since then, Crenshaw’s ideas about intersectionality have extended to LGBTQ people, mixed-race people, nonbinary people, and, of course, disabled and autistic people. Just as Black women experience double discrimination of racism and sexism, autistic people of color encounter bias that is unique to their combination of identities. This is not to create a contest of who is more oppressed but rather to understand how certain people’s lived experiences are unique so that the discrimination they face can be addressed.
Morénike Giwa Onaiwu, the chairwoman of the Autistic Women and Nonbinary Network’s Committee on Autism and Ethnicity, spoke to me about her own intersectional identity. She is the child of West African immigrants and talked about how Black Americans and people of color often worry that “my own people don’t understand me.” Autistic people of color find themselves trying to find ways to participate in their own culture while also feeling completely out of place. While this is surely something all autistic people struggle with because of the cultural expectation that one should “fit in” with one’s own ethnicity, it can feel especially overwhelming for autistic people of color.
For example, Giwa Onaiwu told me that some of her children are also autistic, including her son, who she said loves to jump around but has little hand-eye coordination, which prevents him from being able to play football. “I live in Texas. And to Texans, football is life, you know what I mean?” she told me. “My child has never played football, and that’s weird to people. That’s odd. That’s what you’re supposed to do, what you’re supposed to be able to do.” Giwa Onaiwu said that growing up, she felt that when she moved around, she had to struggle to prove that she was sufficiently Black and was accused of “talking white.”
“It was frustrating, ’cause I’m like, ‘I’m just as Black as you. In fact, I’m Blacker. I’m African!’” she explained.
Timotheus Gordon (the graduate student whom I interviewed about accommodations in chapter 2) said he often felt a need to prove he was sufficiently Black and masculine. While he loved Japanese anime and My Little Pony, he also loved sports, which he used to connect with other men.
“The first way I got into the in-crowd with [neurotypical] peers is showing people that I can play sports,” he said. “I never was gonna be the next Lebron James or Marshawn Lynch, but I showed people that I know the rules, I know how to follow the rules.”
Growing up as a Black man in Chicago, Gordon said he felt like he had to show he was sufficiently into the hip-hop and rap music that was popular at the time. “I had to dress a certain way, behave a particular way,” he said, which was difficult for him at first, but he learned to “fit into that culture” when he was in high school.
Gordon said when he first met other autistic people, he found it difficult because he had spent so long trying to blend in with his peers. This experience is typical for autistic people of color who wind up having to navigate multiple spheres to prove they belong. They have to prove to educators and physicians that their symptoms are sufficient to warrant an autism diagnosis and receive the necessary services, but at the same time, they also have to confront the fact that they’re not represented in the autistic community and so they struggle to fit into spaces that
were largely built by white people without them in mind.
What Do I Do with This Brown Skin and Autistic Brain?
But it is not just African Americans who are overlooked when it comes to autism diagnoses. One of the biggest barriers to diagnosis is the existence of a language gap, so it can be especially challenging for immigrants to get the support and services they need.
As a third-generation American, I often worry that I am too far removed from my family’s roots in Mexico, but the cruel irony is that I likely received my diagnosis because my family speaks English as our primary language and we are largely assimilated. This does not make us better than those who have not assimilated as easily; assimilation is often forced on immigrants, the children of immigrants, and their grandchildren. It’s the only way to have the opportunity to achieve a modicum of success in America, where white English-speaking people write most of the rules for the economy, politics, and culture. Sometimes, the capacity to assimilate means the ability to access the tools to learn English and gain exposure to what is acceptable. Assimilation is capital, and those without the ability to assimilate often can’t give their autistic children the chance to be accepted as autistic and therefore have their humanity accepted.
A study published in 2013 in Pediatrics found that in a sample of 267 primary care pediatricians in California, 30.4 percent offered general developmental screenings and 42.9 percent offered screenings for autism spectrum disorders, but only 17.7 percent offered general developmental screenings in Spanish and only 28.7 percent offered screenings for autism spectrum disorders in Spanish.
Katharine Zuckerman, an associate professor at Oregon Health and Science University who coauthored the study, said the irony is that people are often assessed for autism because they have trouble communicating with others. “So, if you go in to have your communication assessed by someone who doesn’t even speak the language that your family speaks, [and] they use an interpreter, it’s such a confusing situation for kids,” she said, adding that on top of that, many assessment instruments aren’t even validated in Spanish.
“We’re using tools that we don’t know how good they are, usually used by people who aren’t doing it in the appropriate language,” she told me. “And that’s even if you get to having a diagnosis, which a lot of families don’t get to. It’s so messed up in a lot of ways.”
Zuckerman told me that there had yet to be a study comparing Latino diagnosis rates to white diagnosis rates. She said that, anecdotally, it is understood that there is a higher threshold for autistic Latinos to get diagnosed compared to white kids who fall on roughly the same spot of the autism spectrum.
“Those kids who aren’t being diagnosed with autism are being diagnosed with nothing, or they’re being diagnosed with something else,” she told me. “These kids are almost functioning okay, and the downside of that is those are the kids that actually benefit the most from therapy.”
Arianne Garcia (no relation to the author) is based in my dad’s hometown of San Antonio, Texas. She told me she did not get diagnosed until she was twenty-five.
“There’s a reason I didn’t get that diagnosis when I was younger,” she said. “It’s because I don’t come off that way. I’m different, and my experiences as a minority have shaped my social responses. If somebody is telling me something in a rude tone, I automatically think, Is it because I’m brown? Is it because I’m a woman? Really, it could just be that I’m awkward and I don’t realize it, or they don’t understand me, or I’m throwing them off guard.”
Listening to Garcia’s experience, I couldn’t help but be reminded of my own path to getting diagnosed. My mom noticed that I wasn’t developing in a normal manner; I had trouble nursing, didn’t walk until I was eighteen months old, and hated when the phone rang or when announcements were made in the grocery stores. When my family lived in Wisconsin, my mom read a newspaper article about autism screenings for preschool and kindergartners. She took me and my sister in, but initially, evaluators wanted to send me on my way. It was only after taking a second look at the results that they asked my mom to bring me back for more tests. It would be easy for me to say that race played a role, but more likely, the criteria were still shifting (this was around the time that Asperger’s syndrome was added to the DSM-I V), and the evaluators didn’t initially catch something they should have.
But midway through my evaluations, my dad got a job in Folsom, California, and my family moved halfway across the country. While we were there, my mom said I did not exhibit the stereotypical behavioral problems that cause so many parents to somewhat callously describe their children as menaces. My mom said I didn’t exhibit signs of aggression, but I did like to have pressure applied to me, so I would lie on the ground underneath a beanbag chair to feel that weight and pressure.
My mom said that the school system kept saying I was “fine” because administrators did not want to spend the money on services. If you ask my mom, she also thinks that I was overlooked was because we were Mexican American. The only reason I finally wound up with my diagnosis was due to a coincidence: My dad’s new boss was married to the director of the special education programs for Sacramento County. Once my mom talked to her, I had no problem getting accommodations in school and was shortly thereafter diagnosed with Asperger’s syndrome.
The fact that I got a diagnosis thanks to my mom’s relentless advocacy makes me feel grateful, but it also makes me shudder because I know that far too many autistic people don’t have the same chance I did. As my mom said, “Unbeknownst to us, we were pulled into a current that would prove to be to your great advantage.” Everything had to go right, from my mom reading about the screenings in the newspaper to the evaluators being willing to take a second look to my mom getting a director of the system on our side. Furthermore, my mother was able to be a stay-at-home mom for the first twelve years of my life before my parents divorced. That enabled her to obtain as much information about my condition as possible. Both of my parents spoke English as their first language, which allowed them to access information. As another study Zuckerman coauthored found, the biggest barrier to Latinos with limited English proficiency was “parent knowledge about ASD” and “trust in providers.” I didn’t have to worry about either.
The biggest barrier that non-Latino white families faced was stress during the diagnostic process. Latinos with English proficiency, like mine, were similar to non-Latino whites overall, but the stress of the process was less common. Zuckerman told me that the findings don’t mean that Latino families didn’t experience stress during the diagnostic process; they did, as did all families in the survey. But if parents don’t understand what autism is, how to get help for their child, or what comes next, the process is that much more difficult.
“I had a parent once tell me, ‘When the doctor told me my child had autism, I thought it was cancer and that he was going to die,’” Zuckerman said. “I’m not saying most Latino parents think that, but Latino parents don’t know as much about autism and so that in itself is a huge marker of stress.”
Staying Alive Becomes an Act of Courage
Autistic people of color recognize that as we try to navigate our identities, others simply identify us by our skin color, which can lead to dangerous or deadly consequences. In 2020, America—and the world—was shocked and horrified when a Minneapolis police officer killed George Floyd, a Black man, by placing a knee directly on his neck. In March of that year, Breonna Taylor, an emergency medical technician, was shot and killed by police officers who had barged into her apartment in Louisville, Kentucky. There were widespread calls for the arrests of the officers who killed her, and that became a rallying cry for many and on social media. The fact that video was captured of George Floyd’s murder and, later, Jacob Blake’s shooting in Kenosha, Wisconsin, seemed to finally make white Americans see that their Black countrymen and women were not being hyperbolic when they said they feared police. The protests, demonstrations, and occasional damaged property triggered Preside
nt Trump to tear-gas demonstrators in front of the White House but also seemed to shift national opinion in favor of Black Lives Matter, which was not the case when the phrase entered the public lexicon in 2014 (though support among white Americans began to decline after a summer of protests).
But in this shift in public opinion, it is essential for the public to remember how vulnerable Black, Latino, and otherwise marginalized autistic people are to police violence. A 2017 study that appeared in the Journal of Autism and Developmental Disorders found that 20 percent of autistic people had been stopped and questioned by the police and 5 percent of them had been arrested by the age of twenty-one. And while there is little data on how race intersects with autism, there have been numerous troubling instances of autistic people of color being victimized by police.
In 2012, a Black autistic boy named Stephon Watts was killed by police in the Chicago suburb of Calumet City. He was only fifteen years old. The police officer said that Watts had lunged at him with a steak knife; Watts’s parents say it was a butter knife. Both the Circuit Court for Cook County and the Illinois Court of Appeals ruled in favor of the police.
In Chicago in 2017, dashcam footage showed an off-duty police officer shooting eighteen-year-old Ricardo Hayes, an unarmed Black autistic man, who fortunately survived the encounter. The sad irony in this case is that Hayes’s family had initially called the police for help after Hayes had gone missing. Unlike in Watts’s case, Hayes was unarmed, and the City of Chicago agreed to pay $2.25 million to his family. However, the officer who shot him, Sergeant Khalil Muhammad, received only a six-month suspension.
Watts’s and Hayes’s stories differ in many ways. Police used the knife Watts was holding to justify their use of force, while Hayes was unarmed. The police officer who shot Hayes was reprimanded and there was a financial settlement, whereas the Watts family had no such closure. Watts died and Hayes survived. What unites them is that they were both young autistic Black men who were shot by police because they lived in a world where racialized autism was considered a threat.