WHY AUTISTIC LATINAS OFTEN GET A LATE DIAGNOSIS

Sara Mendez, 23, started to think she might be autistic after one-too-many jokes from her then-boyfriend who attributed her insect collection and love for mole crickets to autism. At first, she brushed off his comments, but a year later, those quips were why she went on a deep dive into the topic. “I was like, ‘Wow, it actually kind of fits,’” Mendez, who often talks about her experience with autism on TikTok, tells Refinery29 Somos. But even with the language to explain her suspicions, she had a long, difficult journey to get her autism diagnosis

At 19, Mendez went to her primary doctor — who was already prescribing her psychiatric medications — and asked if it could all be autism. His reaction shocked her. “He said, ‘That’s so disrespectful because I have a 2-year-old son who’s autistic and you are nothing like him,’” she says. “He shut me down immediately, and I was kind of in shock. I don’t remember the rest of the interaction. I think I blocked it out.”

But she didn’t let that stop her. Mendez found a psychiatrist to do a full evaluation during the Covid-19 quarantine. She contacted the first person she found online with availability and made a virtual appointment. The results came back a week or two later. “I don’t think you’re autistic. You have bipolar I. You have borderline personality disorder and schizotypal personality traits,” she remembers the psychologist telling her. She pushed further, asking why it wasn’t autism. He responded: “Oh, you made really great eye contact with the camera. You’re just a very smart girl that doesn’t know how to act like a normal human being.” 

“There are disparities with diagnosis of Black and brown people in general where we tend to need more appointments to get a diagnosis.”

Dr. Sandra León-Villa

Mendez, like others, trusted the person with the credentials. “I didn’t question it,” she says. “I didn’t fight back.” 

After that, the psychiatrist prescribed Mendez a variety of mood stabilizers and antipsychotics to treat the diagnoses. “I was on all these medications, and really like not doing well mentally or physically,” she says. In total, Mendez was on probably 20 to 30 medications in a span of eight months before she got her lifesaving autism diagnosis. 

At her university’s Crisis Center, she sat down with a counselor after an assault. Within moments of meeting her, the counselor said: “I see you’re diagnosed with all these things, but was autism ever considered?” The counselor was autistic and finishing up her PhD on autism in women. She told Mendez, “You have all of the symptoms, and because you are Latina, it makes sense why you were misdiagnosed.”

Other therapists of color agree. “There are disparities with diagnosis of Black and brown people in general where we tend to need more appointments to get a diagnosis,” Dr. Sandra León-Villa, an autistic Xicana psychologist, tells Somos. According to a study published in the Journal of the American Academy of Child & Adolescent Psychiatry in 2002, Latines are generally diagnosed 2.5 years later than non-Latine whites. “When we’re talking about high-masking Latinas, they are just falling through the cracks,” León-Villa adds.

Through masking, autistic people try to “blend in” to neurotypical spaces. “They’re trying to mask autistic mannerisms, sometimes without even knowing it, and that’s the case when we don’t know that we’re autistic,” Dr. León-Villa adds. “We’re kind of like, ‘I just don’t like eye contact, but I’m gonna make myself. I know it’s really taxing or really draining on my energy to have small talk, but this is what people do, so let me do it.’”

There are several reasons Latinas aren’t getting the autism diagnosis, and Dr. León-Villa points to the clearest one: the stereotypes. “It’s not a coincidence that Black and brown kids are most often misdiagnosed with conduct or behavioral problems when it’s really autism or some other condition,” she says. “And so with women, we tend to be more assertive, right? We tend to kind of just have no filter and say what’s on our minds. So to a lot of people that may come off as difficult or problematic. When you add that to stereotypes that already exist in Black and brown communities that are held by predominantly white spaces, like mental health providers and medical doctors, women are more likely to be misdiagnosed with something like borderline personality or bipolar disorder,” exactly what happened with Mendez. 

It’s not just the medical community at fault but also society’s perception of what autism “should” look like. Daniela Villada Londono’s school first notified her parents of her autistic traits when she was about 10. But she and her family had just moved to the U.K. from Colombia, and because the school didn’t provide translation or interpreters, they didn’t understand the school’s concerns. 

Later, when Villada Londono’s school brought it up again, and her family understood, they chose not to get her support because of their own stigmas around neurodevelopmental disorders. “My parents had this bad perception of autism, so they hid it from me. And they didn’t want to get me diagnosed with it because they didn’t want to believe that I was autistic. They thought that [my autism diagnosis] would mean that they did a bad job parenting or something,” Villada Londono tells Somos.

She learned the truth at 18 and started to pursue her diagnosis by herself — which came six years later in 2022.

A similar thing happened to Jane,* a New York-based trans sex worker who grew up in Puerto Rico and received her diagnosis two years ago at 26. “It had been a long time coming,” she says. For years, her close relatives, which Jane says also exhibit many of the symptoms associated with autism, wrote it off as “manías.” Jane finally got her official diagnosis once she was an adult living in the contiguous U.S.. 

“Anyone that’s not the basic stereotypical white boy-like image of autism is typically misdiagnosed. So hey, that was me,” she says. “It’s clearly affected my everything. I almost flunked out of college because it was too hard, and I got fired from jobs. So really the diagnosis was more like, ‘Okay, yeah, this explains it really well.’” 

“When we’re talking about high-masking Latinas, they are just falling through the cracks.”

DR. SANDRA LEÓN-VILLA

With or without a diagnosis, autistic people remain autistic. In the end, there’s more harm in remaining in the void than having a concrete explanation. “It’s not just a disservice to the Latine community, but it’s a disservice to the autistic community in general because we’re not educating folks on what it is. … And it stigmatizes us, but it also has an impact on our communities because we’re not getting early support services,” Dr. León-Villa explains. “We’re not referring them to things like occupational therapy or speech therapy. More importantly, we’re not teaching our kids or ourselves how our brains work.’”

In addition to educating people on much-needed accommodations and general information about autism, Dr. León-Villa also says change lies in representation. “The stereotypical ideas of autism that people have — and this is not just because of what the media shows, it also has to do with research on autism — are typically white boys,” she says. “Even in our own minds, we have no concept of what a BIPOC autistic person looks like because our programming has been based on white boys.” 

*Name has been changed to protect the source’s identity

2024-07-09T19:25:27Z dg43tfdfdgfd