Navigating Autism and Stigma in the Hispanic Community
In many Hispanic and Latino communities, stigma around autism remains a painful barrier to support. From whispered judgments at family gatherings to systemic bias in healthcare settings, families often face an uphill battle to accessing services and feeling supported and understood.
Georgina is her son Xavier’s strongest advocate, overcoming hurdles to secure his autism diagnosis.
Georgina Perez Liz, an immigrant from Mexico and researcher at the A.J. Drexel Autism Institute, knows this all too well. When her son Xavier was diagnosed with autism, she quickly realized that supporting him meant confronting not just a diagnosis but deeply rooted cultural beliefs and expectations.
“In Latin American culture, autism is still associated with a lot of stigma because having behavioral manifestations as it does, it is very often associated with parenting styles, discipline, and family dynamics,” she explains. “If your child behaves in a way that is not socially acceptable or different from what is expected, people are going to say you’re not a good parent, that you cannot control your child, that your child is spoiled. Your child’s behavior reflects on you as a parent.”
For Georgina, those judgments weren’t just distant whispers—they cut deep. “I remember nearly having a meltdown from reacting to people’s comments about my son’s meltdowns. What bothered me most wasn’t his behavior but the cruelty behind the words. Autism isn’t what’s difficult—it’s the lack of kindness from others.”
In cultures where family and community are central, that kind of judgment can be isolating. Children who avoid social interaction or struggle to sit still may be misunderstood as disrespectful or defiant.
“Because the Latino and Hispanic cultures are very family-focused, it is expected that you participate in a lot of intense and frequent social situations,” Georgina explains. “For example, if we went to a party and my kid didn’t want to sit at the table with the other kids and just wanted to be by himself, there was an idea that that’s something that’s off from the social expectation.”
National organizations are beginning to address these gaps. At Autism Speaks, that means improving access to information, screening tools, and culturally responsive care for Hispanic and Latino families.
“We’ve seen firsthand how stigma and language barriers delay diagnosis and support,” says Andy Shih, chief science officer at Autism Speaks. “Our goal is to ensure that every family—regardless of background—can access the information and care they need.”
The Impact of Stigma on Access to Care
Georgina’s story reflects a broader experience shared by many Hispanic and Latino families, where stigma and systemic barriers often delay diagnosis and make it harder to access care.
When she first raised concerns about her son’s language delays to doctors in Mexico, the response was often dismissive. “We heard all sorts of things,” she recalls. “That boys develop language later, that being spoken to in two languages causes confusion, that moving homes could be traumatic. I asked everybody and their grandma—and still, the answer was always, ‘Give him some time.’”
Those concerns eventually led Georgina and her family to return to the U.S., where services were more accessible. But even in Philadelphia, navigating the healthcare system proved challenging.
“Language is only one of the layers of complexity,” she explains. “The other part is that all of us who came from somewhere else are not familiar with how this system works in ways we didn’t grow up with. It’s not just a matter of having translations—it’s about having help navigating the systems.”
These challenges are well documented in the research: Only 10% of primary care providers offer both general developmental and autism screenings in Spanish (Zuckerman et al., 2013). Even providers who serve large Latino populations report more difficulty diagnosing autism in children from Spanish-speaking households (Zuckerman et al., 2013).
Latino parents often hesitate to bring up developmental concerns with providers, fearing judgment rather than support (Rivera-Figueroa et al., 2022). Disabilities are often seen as a source of shame in Latino communities, with some families feeling pressured to hide their child’s behavior or diagnosis (Rivera-Figueroa et al., 2022). While many parents do notice signs early, diagnosis is frequently delayed by unfamiliarity with autism, stress around the process, and limited access to specialists (Zuckerman et al., 2013; Zuckerman et al., 2017).
Those with limited English proficiency face even steeper hurdles, leading to fewer therapy hours and higher unmet needs compared to white families (Zuckerman et al., 2017). These delays have lasting effects; while diagnosis rates among Hispanic and Latino children are rising, children are more likely to be diagnosed later, experience gaps in care, and have co-occurring intellectual disabilities (Montiel-Nava et al., 2024; Rivera-Figueroa et al., 2022; Shaw et al., 2025).
“Culture helps shape how families understand autism and navigate care,” says Dr. Shih. “We can’t take a one-size-fits-all approach—effective support must reflect the diversity of lived experiences across our community.”
For Georgina, even asking the right questions wasn’t enough to get clear answers. It wasn’t until her son was turning four that he was finally evaluated and diagnosed—years after she first raised concerns.
After enrolling him in early intervention services in the U.S., Xavier qualified for speech therapy, occupational therapy, and special instruction. But no one mentioned autism. “Not the therapist, not the case manager, not even the psychologist who did the early intervention evaluation,” Georgina says. “They didn’t touch the word autism with a 10-foot pole.”
It wasn’t until Georgina discovered the M-CHAT screening tool on her own and pushed for a formal evaluation that Xavier was finally assessed. Even then, her family spent months waiting for an appointment. When it finally came, only days after Georgina gave birth to her second child, the process felt rushed and impersonal.
“At Autism Speaks, we’re focused on partnering with families and community groups to address the disparities faced by families like Georgina’s,” says Dr. Shih. “From expanding access to early screening tools like the M-CHAT to supporting culturally responsive programs like the Caregiver Skills Training, our goal is to help families feel informed, empowered, and less alone.”
Finding Culturally-Competent Care
Even in Georgina’s family—where both parents are fluent in English—language and cultural mismatches impacted the care her son received.
Because they are bilingual, Georgina had to sit in on Xavier’s speech therapy sessions to make sure his Spanish words were not missed.
“Sometimes my son would say a word in Spanish during speech therapy, and the therapist wouldn’t acknowledge it or even realize that it was a word,” she says. “That cultural piece was missing. I felt like I had to sit in on sessions to make sure it didn’t get lost.”
Her family’s experience shows that even when services are available, they often fall short of meeting families where they are. That’s why finding culturally competent care, or care that reflects a family’s language, values, and lived experiences, is essential. Simply having materials translated is not enough—providers must also be skilled at navigating cultural nuances and acknowledging the lived experiences of families.
“You don’t necessarily need someone who matches you in all demographic characteristics, but you need someone who understands how your identity might intersect with the work that you need to do,” explains Psychologist Dr. Jennifer Sykes. “You should make sure you’re working with someone who recognizes the value and importance of your culture.”
Finding a provider who is a good fit isn’t always easy. Families can start by exploring tools like the Autism Speaks Resource Guide, a free, searchable online database that helps families connect with local services—from diagnosticians and therapists to parent support groups. Families can search by location, provider type, language preferences, and more.
Community support groups can also be a valuable resource. “There are parent support organizations that provide resources and information for families that are starting out,” says Georgina. “Other parents are a great source of top-tier information because they can share tips and tricks and talk about how their experience was. They can help others bypass that steep learning curve.”
Asking the right questions upfront can make a big difference in finding the right fit. When evaluating providers, ask how they support autistic people from diverse backgrounds and how they personalize care. The best care is grounded not just in clinical knowledge but in empathy, openness, and cultural humility. Providers should welcome input, stay current with best practices, and never place the burden of cultural education on the families they serve.
If a provider consistently dismisses concerns or fails to understand a family’s perspective, it may be time to consider other options. The most effective care begins with empathy, respect, and a willingness to listen—regardless of cultural background.
To explore Autism Speaks’ resources for Hispanic and Latino families—including information about autism, resources in Spanish, and the M-CHAT screening tool—visit autismspeaks.org/que-es-el-autismo.
Marta Chmielowicz leads science communications at Autism Speaks, working to advance the mission of the organization to create an inclusive world for all individuals with autism throughout their lifespan. For more information, email marta.chmielowicz@autismspeaks.org or visit autismspeaks.org.
References
Montiel-Nava, C., Montenegro, M. C., Ramirez, A. C., Valdez, D., Rosoli, A., Garcia, R., Garrido, G., Cukier, S., Rattazzi, A., & Paula, C. S. (2024). Age of autism diagnosis in Latin American and Caribbean countries. Autism: the international journal of research and practice, 28(1), 58–72. https://doi.org/10.1177/13623613221147345
Rivera-Figueroa, K., Marfo, N. Y. A., & Eigsti, I. M. (2022). Parental Perceptions of Autism Spectrum Disorder in Latinx and Black Sociocultural Contexts: A Systematic Review. American journal on intellectual and developmental disabilities, 127(1), 42–63. https://doi.org/10.1352/1944-7558-127.1.42
Shaw, K. A., Williams, S., Patrick, M. E., Valencia-Prado, M., Durkin, M. S., Howerton, E. M., Ladd-Acosta, C. M., Pas, E. T., Bakian, A. V., Bartholomew, P., Nieves-Muñoz, N., Sidwell, K., Alford, A., Bilder, D. A., DiRienzo, M., Fitzgerald, R. T., Furnier, S. M., Hudson, A. E., Pokoski, O. M., Shea, L., … Maenner, M. J. (2025). Prevalence and Early Identification of Autism Spectrum Disorder Among Children Aged 4 and 8 Years – Autism and Developmental Disabilities Monitoring Network, 16 Sites, United States, 2022. Morbidity and mortality weekly report. Surveillance summaries (Washington, D.C.: 2002), 74(2), 1–22. https://doi.org/10.15585/mmwr.ss7402a1
Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2017). Disparities in Diagnosis and Treatment of Autism in Latino and Non-Latino White Families. Pediatrics, 139(5), e20163010. https://doi.org/10.1542/peds.2016-3010
Zuckerman, K. E., Mattox, K., Donelan, K., Batbayar, O., Baghaee, A., & Bethell, C. (2013). Pediatrician identification of Latino children at risk for autism spectrum disorder. Pediatrics, 132(3), 445–453. https://doi.org/10.1542/peds.2013-0383
