Autism in Latin American Communities

Latine woman smiling wearing a floral dress. Behind her are colorful buildings including one with bright blue corrugated tin siding. There is grass directly behind her and mountains and a bright sky in the distance.

This blog post is an adapted transcript from the above video; click to watch [with captions]. Traducción al español aquí: Autismo en Las Comunidades Latinoamericanas.

Hi, I’m Kayley Whalen, an autistic, transgender Puerto Rican and Guatemalan-American. I’m right now in Huehuetango, Guatemala, and I’ve been spending the last several months researching autism in Latin American cultures. I created this blog/video to explain some key facts about our community.

Why I’m using the term Latine

One note on language for this video/blog is that there’s some debate around what term to use for people with Latin American heritage. One of the older terms that I grew up with and many people still use is “Hispanic,” which is based on the language of Spanish. Now, because I’m specifically talking about populations from Latin America (and not Spain), and because I wish to include people who speak other languages including Portuguese, the more recent widely-accepted term would be “Latino.”

Yet I prefer not to use “Latino” because it is patriarchal (the “o” is masculine) and I want to be inclusive of gender nonbinary people. In 2014, the term “Latinx” became a popular gender-neutral term. However, more recently, native Spanish speakers and people in Latin American countries have started adopting “Latine” as a gender neutral term. “Latine” is easier to conjugate and the “e” ending matches better with traditional gender-neutral Spanish-language vocabulary. Because of this, I’ll be primarily using “Latine” in this piece.

Latine Autistic people have always existed

Autism has always existed in Latin American countries and in Latine populations in the United States. However, it has been widely under-diagnosed and misunderstood. The science and medical literature about autism has not really permeated much of Spanish-speaking or Portuguese-speaking Latin America in the way that it has English-speaking populations in the United States.

When we talk about autism, we often think about how in the United States, there’s been a growth of visibility ever since the neurodiversity movement started in the 1990s. There was a large surge in autistic self-advocacy in the early to mid 2000s in the United States, with many new groups formed led by autistic people. However, that surge has not yet reached many non-English-speaking Latine communities around the world. As I’ll explore in this piece, we need more resources, information, and advocacy for non-English-speaking Latine folks in the US. We also need more international Latin American education and advocacy around autism.

One thing I talked about in previous videos and blogs is that not only am I a Latine autistic person, my Puerto Rican grandfather, Federico Saras, was also likely autistic.

Latina woman smiling in a sports jacket in front of a waterfall is at Laguna Magdalena. On the bottom left is a black-and-white photo of a Puerto Rican man and Guatemalan woman in party hats. There is a Puerto Rican and a Guatemalan flag. Text reads Honoring my Puerto Rican & Guatemalan Heritage. — Watch: Honoring my Puerto Rican & Guatemalan Heritage

I believe my grandfather was almost certainly autistic because of all the facts that I’ve been able to glean from interviewing his friends, interviewing his doctor, and interviewing his family. He certainly has a lot of the common markers of autistic behavior I’ve learned about as an advocate and experienced in the community. Also, considering the fact that my whole life I’ve been compared to my grandfather, it seems obvious to me that he had autism.

The first autism diagnosis criteria was developed in the 1940s. Later, Bruno Bettelheim in the 1950s popularized some really awful ideas about autism. Their work became widely known long after my grandfather, born in the 1920s, would have been diagnosed. I believe my Grandfather was an autistic person who simply wasn’t diagnosed. Today we still have very low rates of diagnosis in Latin American communities, especially in adults.

Why Latine Autistics are under-diagnosed

Autism is under-diagnosed and diagnosed later in life for Latine children and adults. One of the main studies that I’m going to reference here is a 2015 article from Academic Pediatrics. This study interviewed 33 Latine families, primarily Mexican-Americans, who had autistic children.

This study, using interviews with parents, identified many of the reasons that Latine parents have difficulty getting diagnoses for their children. It also identified certain cultural barriers, which I’ll touch on later, for why they might not seek out or understand an autism diagnosis. This diagram is from the study:

Autism is diagnosed on average 2.5 years later in Latine children than non-Latine white children in the United States. One of the big reasons for this is the lack of understanding and lack of materials, resources, and education for non-English speaking Latines.

As I mentioned there’s a lack of articles on autism in Spanish and Portuguese. There’s a lack of doctors who can communicate to Spanish and Portuguese-speaking Latine parents. Doctors who are Spanish or Portuguese-speaking may not have up-to-date information on autism.

One 2013 study looked in the California area at 267 primary care pediatricians to see how many autism offered screenings in Spanish. Of those 267 primary care pediatricians, 30.4% offered general developmental disability screenings for children, and 40% offered Autism Spectrum Disorder screenings for children. But when looking at how many of these offer screenings in Spanish, the numbers drop significantly. 17.7% offered general developmental disability screenings in Spanish, and 28% offered autism screenings in Spanish. So ultimately, of the 267 pediatricians, only about 1 in 10 pediatricians offered autism screenings in Spanish.

Lack of research on BIPoC and Latine Autistics

For a lot of history, autism has been seen as a “white disorder.” The original studies done by Dr. Connor in the 1940s were done on white children, almost all of whom were in families that were in the upper-middle class and socially visible. Many of these families were in Who’s Who in America, and several were families of famous scientists. These children of scientists and well-to-do white families set the initial example of autism as we’ve understood it for decades. And unfortunately, this is still pervasive. There is a great lack of understanding of how autism manifests in non-white children.

As an aspect of this racist legacy, often autism is missed in children of color. Also, a child of color who acts out is more likely to be seen as unruly, undisciplined, and as a “behavior problem.” Whereas a white child with the same behavior would be treated with more compassion and support, and as a result would be more likely to be diagnosed with autism. Children of color are often mis-diagnosed with other conditions that are more stigmatizing than autism.

Latine Autistics face systemic discrimination

Latine autistic people face systemic discrimination, lack of access to health care, and lack of access to employment opportunities. These may be related to immigration status, as well as to racist and xenophobic discrimination in society. For Latina women in particular, they make far less money regardless of their educational status, immigration status, and job qualifications than white women. According to recent data, they are making $0.57 for every dollar a white man would make for equivalent work.

Graphic with bar graph reads Gender Pay Gap. $1:00 White Men, $0.77 White Women, $0.69 Black Women, $0.57 Latina Women. For Every Dollar a Man Makes, Women Make Less. — From: Latina Equal Pay Day 2021

In addition to this, Latines are amongst the least likely to have health insurance of different racial and ethnic minority groups in the United States. This lack of health insurance lead to a lack of support needs being met for autistic folks and lack of diagnoses. Anecdotally, the other Latin autistic folks that I know almost all received their diagnoses late in life, like in their twenties and thirties.

This includes my peer, Kayla Rodriguez at the Autistic Women & Nonbinary Network and other peers, including Eric Michael Garcia, the author of We’re Not Broken: Changing the Autism Conversation. Both of them helped inspire me to research and write this.

On left, photo of Latino man in a black dress suit white shirt and red tie with hands crossed in front of him with a stern look on his face. On right, Image of book cover with text We're Not Broken Changing the Autism Conversation, Eric Garcia — Eric M. Garcia, author of We’re Not Broken: Changing the Autism Conversation

One other problem with getting a diagnosis for your autistic child is that often people of color, including Latine folks, often do not get taken as seriously by medical professionals. They are often told to “toughen up,” or that their symptoms aren’t real. This was evident in the Academic Pediatrics study that I mentioned previously. The study found that parents felt that “providers’ dismissive behaviors and/or lack of inquiry into parents’ concerns delayed diagnosis.”

Latine cultural bias against Autistic & Disabled people

There are certain cultural factors within Latin American cultures which contribute to a lack of willingness to understand and accept autism, and a resistance to seeking out a diagnosis.

Since this is a sensitive subject, I want to approach this from a feminist and racial justice perspective. Certain aspects of Latin American culture that we assume are intrinsic to the culture are actually results of racism and colonization. One of these cultural manifestations of racism and colonization is Latino masculinity, often referred to with “machismo.”

For Latinos in the United States, machismo is tied to the immigrant experience of needing to prove that you’re manly; that you’re as tough or tougher than white men. There are many harmful stereotypes about Latino men: they’re supposed to be aggressive, to be “gangsters,” to be “spicy.” There’s a belief that aggressiveness is in their blood. These are very racist concepts that harm men and women, and they definitely harm autistic folks.

Here I want to talk about fathers. As the study I cited in Academic Pediatrics explored, most of the people who sought diagnoses for their children were mothers. When those mothers approached their husbands, often the husbands were dismissive or didn’t want to admit that their child was somehow “weak” because they were disabled.

In one case, where a mother who had been pursuing a diagnosis for her child then told her husband, he said, oh, “nothing’s wrong with the child. You’re the one that’s crazy.” Mexican-American men in the study talked about how they wanted that tough kid that they could take with them to the rodeo, that they could show to their coworkers. They expressed their shame that it reflects poorly on a man if they have a child who is autistic or disabled. They believed it meant they’re somehow weak or not masculine enough .

This shame about having a disabled child is not unique also to fathers. There are definitely accounts of mothers who hid the fact that their child is disabled. One anecdote in this study talked about a family who would always keep their door closed so their neighbors could never see that their child used a wheelchair.

Latine gender stereotypes harm Latine Autistic Women, Femmes, & LGBTQIA+ people

Latina women and femmes face particular discrimination in society that is unique to their identity. This goes hand in hand with Kimberlé Crenshaw’s theory of intersectionality, which was formulated around being a Black woman.

I spoke with Kayla Rodriguez and helped edit a blog post that she just published on the Autistic Women and Nonbinary Network website. In it she talks about the “spicy Latina” trope, which is a very common Hollywood and even pre-Hollywood trope from opera of “spicy señoritas and hot tamales.”

The “Spicy Latina” is seen as sexually aggressive and unstable. The type who is “gonna steal your man,” who’s very gregarious, loves to dance, and who loves to party. Unfortunately for a lot of people, Hollywood and pop culture defines us. And for autistic people who may pick up on behavior and kind of mask by copying behaviors they might see on TV and media kind of copying the Spicy Latina trope is harmful. I usually think of Mimi from Rent as the stereotypical “Spicy Latina.” A lot of people will point to J Lo when this stereotype is discussed. And the stereotype was first established by the character Carmen from the opera Carmen

Photos of four Latina women. All are in sexy poses. On the fa left a woman in a black crop top with. a rose in her teeth. Next to her a woman with gold hoop earrings blowing a kiss at the camera. Next to her a woman yelling. Next to her a woman in a red dress in a dance pose similar to Flamenco. — Watch: The Spicy Latina Trope, Explained

These spicy Latinas, with their sexual aggressivity and flirtatiousness, are not always the healthiest thing for a young autistic person to copy and think of as normal. It leads to poor body image. Eating disorders are particularly prevalent in the autistic community, especially and among women and femmes. This hurts Latinas.

A lot of this trope is based around patriarchy and heteronormativity and the idea that Latina women are expected to particularly be desirable to men and to desire men. This stereotype also leads to the idea that Latina women are sexually available. 77% of Latinas, according to a recent study, have been harassed in the workplace.

For Latine women and femmes in the autistic community; who feel they can never live up to these stereotypes, there’s often a feeling that you fail as a Latina. I can very much relate to this. I’ve never been a good dancer, never been gregarious, or hyper-aggressive. And as a queer woman, I’m not the “Latina who’s gonna steal your man.”

One more thing about gender stereotypes is, as I talked about earlier, there’s often this expectation of men being hypermasculine. Young autistic boys who are introverted, shy, emotional, prone to shutdown or meltdown are going to get bullied and mistreated by their peers for not living up to Latino machismo.

Police & carceral violence against Latine Autistics

Latine autistic people are at a much higher risk of racial profiling and racialized violence than non-Latine autistic people. This includes police violence and violence in carceral systems, including institutions. We often refer to this as “racialized autism.” Certain behaviors or characteristics of autism like stimming, or repetitive behaviors or communication differences, might be seen as threatening in a BIPoC autistic person, but might not be seen as threatening in a white autistic person.

Now, one of the most extreme and disturbing examples of this was the shooting of Charles Kinsey, who was attending to a Latine autistic man, Arnold Rios-Soto. Charles Kinsey was a Black mental health provider/support for Arnold Rios-Soto, and police shot him while responding to a call that there was a man who was threatening to neighbors. Neighbors thought Rios-Soto might have a gun or be threatening suicide.

Photo of a Black man with bald head and grey beard holding a cane and wearing a blue dress shirt and black dress pants. Behind him are other people looking at their phones and palm trees. — Charles Kinsey, support provider for Arnoldo Rios-Soto

In fact, Arnold Rios-Soto, a 27-year-old Latino man, was simply sitting outside of their group home (I’m not a big fan of group homes, by the way) playing with a toy truck.

Photo of a Brown Latino man with short dark hair in a beige polo shirt holding a silver and purple toy truck. — Arnoldo Rios-Soto

Police thought the truck might be a gun. Video shows Charles Kinsey with his hands up in the air, trying to calm down Rios-Soto while trying to reassure officers that neither of them had a weapon. Police officers later claimed they shot at Arnoldo Rios-Soto when they wounded Charles Kinsey in the leg. Then Arnoldo Rios-Soto panicked and was detained. He was having an autistic meltdown from someone being shot next to him, and so they tranquilized him. This brutal police violence points to the fact that autism is often racialized as seen as a threat.

Another example to talk about carceral systems and institutionalization is the Judge Rotenberg Center, which is infamous for using shock treatment, “aversive therapy,” on the disabled and autistic people there. Now, I don’t know the exact number of Latine people who are housed there, but we do know that the majority of people housed there are Black and Brown autistics.

This racist violence is one reason I feel as an autistic movement, and as a Latine movement, we really have to be working side-by-side with #BlackLivesMatter and attempts to defund the police, and end institutionalization and carceral systems of all forms, in line with Disability Justice principles.

We need Latine Autistic Advocates in nonprofit leadership roles

Latines are very underrepresented in nonprofit leadership in the disability and autistic movements. There’s a lack of Latine leadership in Executive Director and Director-level roles; also on Boards of Trustees and Boards of Directors. There’s a real lack of representation, and this is something I’m particularly passionate about as person who’s served on many nonprofit boards. As someone who has had leadership positions in the nonprofit sector, I know what it is like to feel isolated and tokenized as a transgender disabled Latina queer person.

There’s a great 2019 report called “Race to Lead” which I highly recommend. It surveyed 5,261 people in the nonprofit sector of all races about discrimination and the impact of racial bias on career advancement in the nonprofit sector.

We often think that we’re better than being racist in the nonprofit sector, but that’s patently false. As the report stated:

There is a “white advantage” in the nonprofit sector…structure and power operate specifically in the context of nonprofit organizations [to] steadily reproduc[e] concrete and experiential benefits for white people despite a stated agreement in the sector on the problems of racial inequity and the need to change those conditions.
Race To Lead Revisited, 2019

A lot of nonprofits founded by white Executive Directors and who traditionally and historically had majority white boards of directors, have real problems with not only attracting people of color into leadership roles, but supporting those Black, Indigenous & People of Color, including Latine folks.

from: Race To Lead Revisited, 2019

The lack of representation of Latines in leadership that may translate into there not being attention to our specific needs, which I’ve outlined in this blog/video. The feeling of tokenization, as I mentioned, is really only one you can solve by putting a majority of BIPOC in leadership roles. The more people of color on your boards and in leadership roles, the more people of color are going to be attracted to work for your organization and feel supported there.

Philanthropic organizations and other nonprofit funders and donors should really be looking to fund organizations that are led by by BIPoC folks. I do think there should be pressure put on organizations that are historically white, which still have a lot of white people driving their policy agendas, to demand that they serve BIPoC communities.

from: Race To Lead Revisited, 2019

So if you’re one of the people who feels marginalized, tokenized or left out of the autistic and Neurodiversity and Disability Movements, I encourage you to keep raising your voice because it’s important that we see ourselves represented.